Consumers' Perception of Consumers' Perception of Shared Individual Digital Shared Individual Digital

Medical Records: Accessibility, Medical Records: Accessibility, Privacy, and New TechnologyPrivacy, and New Technology

Kier Wallis & Ronald E. RiceKier Wallis & Ronald E. Rice

Dept. of Communication Dept. of Communication

UC Santa BarbaraUC Santa Barbara

Digital Medical Records Digital Medical Records Technology Technology

Problem: providers not connected; difficult to Problem: providers not connected; difficult to share or transfer information; records incompleteshare or transfer information; records incomplete

Solution: Digital Medical Record (DMR)Solution: Digital Medical Record (DMR)– Clinical and administrative data from individual Clinical and administrative data from individual

patients (e.g., lab results, x-rays, appointments, patients (e.g., lab results, x-rays, appointments, doctor’s notes), stored in electronic databasedoctor’s notes), stored in electronic database

Improves healthcare efficiency,Improves healthcare efficiency,effectiveness effectiveness

•1998: Formed by leading health care organizations in Santa Barbara

•Provides technical, organizational, financial, and legal infrastructure for sharing clinical data among regional physicians, hospitals, consumers, and health care related organizations

•SBCCDE hosts clinical data SBCCDE hosts clinical data repository on behalf of repository on behalf of participating organizations participating organizations

Patients can view lab results, Patients can view lab results, users who have accessed users who have accessed their recordstheir records

My Research My Research

New area; issue at forefront of political and New area; issue at forefront of political and medical discussionsmedical discussions

Uses several research methods and different Uses several research methods and different levels of analysislevels of analysis

Learn about, work, and meet with organizations Learn about, work, and meet with organizations involved in SBCCDE involved in SBCCDE

Influence future efforts to inform and educate Influence future efforts to inform and educate consumers about DMRs consumers about DMRs

TheoryTheoryDiffusion of Innovations (Rogers, 1983)Diffusion of Innovations (Rogers, 1983)– Consumers’ perception of new technology on Consumers’ perception of new technology on

5 attributes influences adoption/rejection5 attributes influences adoption/rejectionRelative advantage, compatibility, complexity, Relative advantage, compatibility, complexity,

trialability, observabilitytrialability, observability

Reinvention Reinvention

PrivacyPrivacy– Ability to control collection and use of Ability to control collection and use of

personal information (Westin, 1967)personal information (Westin, 1967)– Organization-consumer struggle affected by Organization-consumer struggle affected by

several privacy factors, including (Smith et al., 1996):several privacy factors, including (Smith et al., 1996):Unauthorized Secondary Use, Improper Access, Collection, ErrorsUnauthorized Secondary Use, Improper Access, Collection, Errors

Public Opinion & LegislationPublic Opinion & Legislation

1999 Poll: 80% feel they are no 1999 Poll: 80% feel they are no longer able to control how companies longer able to control how companies collect and subsequently use consumers’ collect and subsequently use consumers’ information (IBM)information (IBM)

HIPAA: Health Insurance Portability and HIPAA: Health Insurance Portability and Accountability Act (1996)Accountability Act (1996)– Intended to safeguard security and confidentiality of Intended to safeguard security and confidentiality of

patient health information esp. for electronic transfer patient health information esp. for electronic transfer

Methodology Methodology

Literature reviewLiterature review

Interviews with stakeholdersInterviews with stakeholders

Pilot focus groupPilot focus group

Focus groupsFocus groups

Word, theme and semantic network analysisWord, theme and semantic network analysis

Feedback from SBCCDE Executive Director Feedback from SBCCDE Executive Director

Pilot surveyPilot survey

Survey Survey

Stakeholder Interviews Stakeholder Interviews Representatives identified by SBCCDE Executive Representatives identified by SBCCDE Executive DirectorDirector– Non-profit stakeholders: SBPHD, SBRHA, communityNon-profit stakeholders: SBPHD, SBRHA, community– For-profit stakeholders: Cottage Hospital, SFMC, cliniciansFor-profit stakeholders: Cottage Hospital, SFMC, clinicians

CommonCommon– Goal to improve healthcare, Goal to improve healthcare,

coordinate medical programscoordinate medical programs– Concern for data accuracy, system’s costsConcern for data accuracy, system’s costs

Non-ProfitNon-Profit– Not enough community Not enough community

involvementinvolvement– Anxiety over security, Anxiety over security, privacyprivacy

For-ProfitFor-Profit– Contributed funding, data, Contributed funding, data,

peoplepeople– InteroperabilityInteroperability

Focus Groups Focus Groups

Individuals’ reactions to implementation of Individuals’ reactions to implementation of digital medical recordsdigital medical records

Group types determined by literature and Group types determined by literature and interviewsinterviews

3 healthy undergraduate groups3 healthy undergraduate groups

1 ‘chronically ill’ undergraduate group1 ‘chronically ill’ undergraduate group

1 graduate student group1 graduate student group

1 employee group1 employee group

Focus Group Results Focus Group Results

All All – Thought DMRs would be accessible, ideal in emergenciesThought DMRs would be accessible, ideal in emergencies– Concerned about medical rights, privacy, securityConcerned about medical rights, privacy, security– Almost all would access recordAlmost all would access record

Undergraduates Undergraduates – Supported implementation Supported implementation – Would sign waiver releasing their medical recordsWould sign waiver releasing their medical records– No significant difference with ‘chronic illness’ groupNo significant difference with ‘chronic illness’ group

Employees, graduates Employees, graduates – Concerned about health insurance, employersConcerned about health insurance, employers– More hesitant to release medical recordsMore hesitant to release medical records

Semantic Network Analysis Semantic Network Analysis

First, looked at word frequenciesFirst, looked at word frequenciesWords occurring most frequently together Words occurring most frequently together form clusters according to strength of form clusters according to strength of relationshiprelationshipWhich words clustered together?Which words clustered together?– Individuals: Individuals: ““I don’t know informationI don’t know information;”;”

medical records’ content; privacy rightsmedical records’ content; privacy rights– Benefits: Access, transfer, better file, “easy Benefits: Access, transfer, better file, “easy

access” for doctorsaccess” for doctors

Model Model

Individual CharacteristicsGender (F) (-)Age (-)Healthy (-)No Chronic IllnessExpenses Responsibility (+)Insurance Responsibility (+)College Year (+)Self Efficacy (+)

Technology UseInternet Use (+)Web Expertise (+)Computer Use LocationWeb Fluency (+)

Privacy and RightsNeed for Privacy (-)General Privacy Concerns (-)Organizational Privacy Concerns (-)Concerns about Computer Privacy (-)Accurate Perception of Patient’s Legal Rights (+)

Innovation AttributesRelative Advantage (+)Compatibility (+)Complexity (-)Trialability (+)Observability (+)

Technology Evaluation

AdoptionReinvention

Survey Survey

Pilot surveyPilot survey

Standard scalesStandard scales: Bunz (2001) web fluency, Buss : Bunz (2001) web fluency, Buss (2001) need for privacy, Smith et al. (1996) (2001) need for privacy, Smith et al. (1996) organizational privacy, Jerusalem & Schwarzer organizational privacy, Jerusalem & Schwarzer (1992) self efficacy(1992) self efficacy

New scalesNew scales: innovation attributes, perception of : innovation attributes, perception of legal rights, adoption, reinventionlegal rights, adoption, reinvention

Descriptive, bivariate, multivariate analysesDescriptive, bivariate, multivariate analyses

413 respondents, 76.8% female, 19.5 yrs old, 80% 413 respondents, 76.8% female, 19.5 yrs old, 80% healthy, 79% not responsible for annual expenseshealthy, 79% not responsible for annual expenses

Survey Results: Survey Results: Adoption & Reinvention Adoption & Reinvention

Bivariate correlations, multivariate regressions Bivariate correlations, multivariate regressions analyzed for directional predictionsanalyzed for directional predictionsMultivariate regression (only significant influences):Multivariate regression (only significant influences):– Related to adoptionRelated to adoption

ObservabilityObservabilityCompatibilityCompatibilityTrialabilityTrialabilityComplexityComplexity

– ExplanationExplanationOrganizational PrivacyOrganizational Privacy

– CollectionCollectionAnnual ExpensesAnnual Expenses

– Related to reinventionRelated to reinventionObservabilityObservabilityRelative AdvantageRelative AdvantageComplexityComplexity

– ExplanationExplanationOrganizational PrivacyOrganizational Privacy

– Unauthorized accessUnauthorized accessAnnual ExpensesAnnual Expenses

Modified Model Modified Model Individual Characteristics

•Expenses Responsibility (+)Technology Use

Privacy and RightsOrganizational Privacy Concerns (-)•Collection •Unauthorized Access

Innovation AttributesRelative Advantage (+)Compatibility (+)Complexity (-)

Errors (Reinvention)Explaining

Trialability (+)Observability (+)

Technology Evaluation

AdoptionReinvention

Significant Variables Significant Variables

Adoption Reinvention Personal Characteristics Annual Expenses .08 * .10 ** Privacy Concerns and Medical Rights

Organizational Privacy – Collection -.12** Organizational Privacy – Unauthorized Access

.12 **

General Computer Concern .10 * Innovation Attributes Relative Advantage .17 *** Observability .44 *** .32 *** Compatibility .25 *** Trialability -.13 *** Complexity - Explanation -.12 ** -.16 *** Complexity – Error .15 ***

Adjusted R2 .41 .33 F-ratio 40.5 *** 32.8 ***

N 393 394 * = p<.05; ** p<.01; *** p<.001

Research ImplicationsResearch Implications

Annual expenses most significant individual Annual expenses most significant individual characteristic characteristic – Populations with different financial Populations with different financial

responsibilities will respond differentlyresponsibilities will respond differently

Technology/Web experience influences Technology/Web experience influences adoption/rejectionadoption/rejection– Disparities in computer skills must be consideredDisparities in computer skills must be considered

Respondents had an inaccurate perception of Respondents had an inaccurate perception of medical rightsmedical rights– If informed, population more If informed, population more

likely to adopt technologylikely to adopt technology

Research Implications Research Implications

High concern for organizational privacyHigh concern for organizational privacy– Inform consumers how to protect information; Inform consumers how to protect information;

encourage orgs. to publish policiesencourage orgs. to publish policies

Respondents interested in interacting with Respondents interested in interacting with medical recordmedical record– Create opportunities for patient involvement to foster Create opportunities for patient involvement to foster

adoptionadoption

Respondents saw benefits in comparison to Respondents saw benefits in comparison to paper records; better treatmentpaper records; better treatment– Emphasize in consumer campaignsEmphasize in consumer campaigns

Future Research Future Research

Role of self efficacy as a moderating variable Role of self efficacy as a moderating variable (tested; no effect)(tested; no effect)

How do clinicians evaluate the technology? How do clinicians evaluate the technology? Does it change their relationship with Does it change their relationship with patients?patients?

How will patients use the technology?How will patients use the technology?

AcknowledgementsAcknowledgements

ParticipantsParticipantsCommunication Dept. Faculty and StaffCommunication Dept. Faculty and StaffURCA (Undergraduate Research and Creative URCA (Undergraduate Research and Creative Activities program)Activities program)Mike Skinner and SBCCDEMike Skinner and SBCCDEFellow StudentsFellow Students

For more information, please visit:For more information, please visit:http://www.comm.ucsb.edu/faculty/rrice/sbccde.http://www.comm.ucsb.edu/faculty/rrice/sbccde.pdfpdf